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Posts Tagged ‘Sexuality’

The Comfort of Blaming Other People for New HIV Cases

Wednesday, April 27th, 2016

He is blaming or firing someone.

The college student had real concern in his eyes when he asked me a question during a recent presentation at American University. “Isn’t it true,” he asked, “that the HIV epidemic continues because people who know they are positive keep infecting other people?”

It is a question I have heard before, in one way or another, and it always makes me cringe. Not only does it thrust all culpability onto those living with HIV, it also promotes a narrative that being infected with HIV chemically changes our moral fiber and transforms us into abusive monsters. It is the kind of characterization that is driving HIV criminalization laws and prosecutions, which are jailing people with HIV for the offense of having sex at all, even when we protect our partners.

“That is simply wrong,” I responded to the student. “In fact, the largest amount of new infections is due to people who don’t know they are positive, who are operating on outdated HIV test results, or who haven’t tested at all. They are having sex while the HIV virus is raging in their bodies. They are the more dangerous group.”

There are few things more satisfying than projecting blame onto other people, especially when you can sling it across the chasm that exists between those who of us who actually know we are HIV positive and those who do not. There is such comfort in pointing out that nope, it isn’t me, it’s that guy over there.

And shouldn’t people know that those who haven’t bothered to get tested lately are responsible for more infections? It’s a message advocates like myself have been delivering for years in an attempt to increase HIV testing and, consciously or not, subtly redirect blame.

Except that my answer to that college student isn’t true. Not anymore. New epidemiological facts, first brought to my attention last month by Paul Kawata of the National Minority AIDS Council (NMAC), completely discredit my long-held beliefs.

More new HIV infections are now caused by people who know they are positive. That’s the truth. And by a wide margin.

Here comes two brief paragraphs of wonky epidemiology. Hang in there. It’s very interesting.

A December, 2015, article in the New England Journal of Medicine (NEJM) using data from 2012 shows that a whopping 69% of new infections can be attributed to people who have already tested positive for HIV but are not in care or not receiving adequate care, and only 23% of new HIV infections are due to those who do not know they are positive (a small, single-digit percentage of new infections are attributable to people who are in regular care but are not necessarily undetectable).

NEJM Slide 2012 data

This, in contrast to a study published earlier last year in the Journal of the American Medical Association (JAMA) but using data from 2009, which states that people who know they are positive are less likely to transmit HIV than those who don’t know they are positive.

So, what happened between 2009 and 2012 that produced such conflicting results? Dr. Jonathan Mermin, the Director of the National Center for HIV/AIDS at the Centers for Disease Control (CDC), happens to have co-authored both studies in question.

Dr. Jonathan Mermin of the CDC

Dr. Jonathan Mermin of the CDC

“Saying the epidemic is largely driven by people who think they are negative is no longer a true statement,” Dr. Mermin told me. “And this is what has changed over time: The United States is one of the countries where a high percentage of people know their status. We’re up to 87%.”

In other words, there is now a much larger pool of people who know they are positive, due to the success of HIV testing efforts. And from this larger pool comes the vast majority of new HIV infections.

“The reason these figures have changed,” said Dr. Mermin, “is because we know more of the people who are positive. The challenge now is to get those people into regular care.”

Since only 30% of those who know they are positive are virally suppressed – a number that has nevertheless grown in recent years – Dr. Mermin strongly believes that the biggest push both clinically and in terms of CDC budget dollars should be devoted to getting people with HIV into care, on treatment, and rendered undetectable (also known as “treatment as prevention”).

“Treatment and prevention are now intertwined” said Dr. Mermin. “You can’t think of one without the other. We have encouraged our grantees to think about that continuum of care, to think about getting people into care, anti-retroviral therapy, while continuing to help people know the facts about transmission. That comprehensive package has been found to be effective.”

The clear evidence after all of this number crunching makes my longstanding habit of assigning blame to “those other people” not only ignorant but ludicrous. There are plenty of HIV infections to go around. This isn’t a contest for the title of Most Likely to Infect Someone.

Funny how my attitude becomes more generous, when it is now people who know they have HIV, like me, who are doing the most infecting.

We also can’t ignore another important statistic. Only 30% of the HIV positive people in the United States are undetectable, which puts an asterisk on another popular message among HIV advocates: that it is safer to have sex with a person who is positive, in treatment, and undetectable.

That is literally true, yes, but it includes a big mouthful of important qualifiers – not all of which can be properly vetted in every risky situation. Hopeful assumptions are not a prevention strategy.

While I applaud the gay dating apps that have added profile options for HIV status that include “undetectable” and “PrEP,” the truth behind these personal factoids should be weighed at least as discerningly as facts presented about, say, their age. Or about their other personal attributes. Ahem.

The growing list of status labels also fractures our community even further, whittling us into subsets within subsets. Suddenly, the new personal failure isn’t simply being HIV positive, but now includes not being undetectable. This doesn’t begin to address the many social determinants that block people who know they are positive from achieving viral suppression: lack of access and financial resources, HIV stigma, an unwillingness to take medications, having failed treatment regimens, or simply being without the wherewithal to locate an HIV clinic or physician and jump through the hoops required to enter the system.

All of the finger pointing in which I have admittedly participated is a useless exercise. By focusing on the relative safety of someone else we renounce our own responsibility. That is why the arrival of pre-exposure prophylaxis changes so much of the game. PrEP puts HIV negative people in charge of their own protection, without having to make judgments or assumptions about others.

But, until PrEP access and education better reaches communities most at risk, many people will still look outward, relying on guesswork and presumptions about who is a danger to them and who is not. As I have recently learned, sometimes we get it very wrong.

It took surprising new research on current HIV infection rates to get me off my high horse and take me back to basics. We’re all in this together. Negative people at risk should maintain HIV testing. Those who test positive should investigate treatment. Barriers should be removed.

And of course, taking action to protect ourselves is our responsibility. It is ultimately ours, and ours alone.

Mark

And, under the banner of “Why Mark Avoids Writing Research-Based Essays,” this counterpoint from the always insightful Londoner Gus Cairns, editor of AIDSmap. Gus references an AIDSmap article, “Model suggests there are fewer people with HIV in the US than thought, and more of them on therapy,” which reads in part:

A study comparing recorded diagnoses of HIV with subsequent records of viral load and CD4 tests suggests that the number of people with HIV in the US could have been overestimated by as much as 45% – and the proportion who are on antiretroviral therapy (ART) with undetectable viral loads could have been underestimated by as much as 50%. There could be a few as 820,000 people with HIV in the US compared with the normally accepted figure of 1.2 million – and up to 55% of those could be on ART and virally suppressed, compared with the most commonly quoted figure of 30%.

PLUS…

HIV Not Crime 2016 logoThe first-ever HIV IS NOT A CRIME conference held last year in Grinnell, Iowa, was the most inspiring conference I have attended in years. Advocates of every stripe were laser-focused on what I consider to be the defining moral issue of our time in the HIV arena.

And now, the second conference is about to be held, this time as the “HIV Is Not A Crime Training Academy,” on May 17-20 in Huntsville, Alabama. You gotta love how these committed advocates choose locations to meet where criminalization is either being successfully reformed (Iowa) or where prosecutions continue (the south). I recommend you attend if you possibly can, or at least follow the event’s Facebook page or the #HIVisNotACrime hashtag on social media. If you would like to promote criminalization reform, check out their handy social media toolkit for sample tweets and fabulous artwork.

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 1 Comment »

Mr Gay World Entry Gets Personal on PrEP and Testing Poz

Monday, April 18th, 2016

When Sadiq Ali heard about a clinical trial for pre-exposure prophylaxis (PrEP) happening in the United Kingdom in 2013, the athletic 26-year old hesitated. He worried about what starting PrEP might say to people about his sexual behavior. The stigma he associated with being on the prevention pill was just too much for him.

Sadiq Ali photo“I was ashamed to even be offered this thing, even though I barely knew what it was,” the Londoner says now. “I thought that only highly promiscuous and risky sex practitioners would take this. I went through this process of ‘slut shaming’ myself. I was still very naïve at this point.”

So, Sadiq waited a few more months, had second thoughts, and decided to enroll in the PrEP study after all. Unfortunately, fate had dealt him a crushing blow.

Between the time Sadiq heard about the study and before he actually began taking PrEP, he was infected with HIV. It occurred literally days before he started taking the pill. His first HIV test during the study, in January of 2014, revealed the infection.

“I thought if I took PrEP it would make me all the things I didn’t think were me. Things that I didn’t want to be,” he says, pointing to the promiscuity about which many gay men taking PrEP are accused. “But instead, not taking it resulted in me contracting HIV.”

The irony of Sadiq’s tragic timing forged an advocate who is fighting both HIV stigma and for the adoption of PrEP in the United Kingdom (it is an advocacy issue that was further ignited when the UK National Health Services took action that has delayed the approval of Truvada as PrEP, perhaps for years).

This past year, Sadiq won the title of Mr. Gay Great Britain, and his advocacy platform is something he now understands all too well: HIV stigma among gay men, and why PrEP is such an important new prevention tool.

In his emotional and inspiring video as a contestant for Mr Gay World – the finals are happening this week on the island of Malta — Sadiq courageously shares his story of deciding to join the PrEP trial too late, and what the experience has taught him about internalized stigma.

“Something was lifted from my shoulders when I filmed the video,” Sadiq says. “I can now be in a position to educate.”

British PrEP advocate and gay internet personality Greg Owen understands just how frustrating the unfortunate timing of Sadiq’s HIV diagnosis was. Greg, too, was infected with HIV just as he was to begin participating in a PrEP trial. The two men – one a longtime advocate, the other a newly minted one – filmed an interview for #GregChats that is as good-natured as it is emotional.

As for Sadiq’s week ahead in Malta, he intends to showcase both his advocacy and his eye-popping skill as a gymnast and circus performer. Anyone in the world can vote for Sadiq right here.

“The community support I’m receiving behind me is swelling up” he says. “I am more motivated than I have ever been and I feel proud. I know that I am doing the right thing. I want to tell people that there is a way to protect yourself, and there is no need to judge yourself for that. To take your status into your own hands is something empowering.”

He also has no preconceived expectations about his chances to take home the title of Mr. Gay World. Winning is beside the point, Sadiq believes.

“Of course,” he says, “I have already won.”

Mark

(Photo credit: Josh Auke. Videos produced by Nuno Lopes.)

 

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 1 Comment »

The Sound of Stigma

Tuesday, April 12th, 2016

Stigma is insidiously quiet. It is conjured in the mind, born of discomfort and fear, and then it is projected at “the other” among us. It judges them and isolates them. And it happens without a sound.

Sound of StigmaStigma lets us take comfort in seeing things in others about which, we believe, they must be ashamed. It is a lazy way to feel better about ourselves—and therefore a popular human activity—and gay men are remarkably good at it. So many of us survive childhood taunts that by the time we come of age we have developed fairly lethal claws of our own. We know how to hurt others before they can hurt us.

But when the AIDS pandemic began over 30 years ago, gay men learned that whatever cleverness we possessed was no match for a crisis that questioned nothing less than our existence on this earth. Churches said we were damned. Politicians wanted us quarantined.

Gay men prefer to remember the earliest days of AIDS as a heroic time, and there is no doubt that many of us behaved that way, but stigma also was a fearsome, daily aspect of our lives in the early 1980s. Heterosexual parents were not the only people disowning someone with an AIDS diagnosis. Gay men also were driven by ignorance and fear. We kicked out our sick roommates. We refused to give them manicures or cut their hair. We turned away from their sunken faces at the neighborhood bar, when they had the guts to show up at all.

Once the initial hysteria subsided and the virus and its routes of transmission were identified, stigma between gay men calmed somewhat, if only because there was so much work to be done to care for the dying. Our brothers with AIDS were not so much stigmatized as pitied for their loss of dignity and humiliating deaths. They were tragic victims, exalted as martyrs.

Until they weren’t. With the advent of breakthrough treatment in 1996, the dying nearly stopped in its tracks. Patients got up from their deathbeds and rejoined the living. There were cheers all around. Within a few years, even the word “AIDS” had nearly disappeared from the gay lexicon.

Those former patients, and the many gay men with HIV to come after them, had no interest in playing tragedy, or in being wizened and terminal and predictable. They wanted to take their rightful places in our social scene, to date and fall in love, to enjoy the bars and the clubs and the house parties. They wanted to laugh and dance and live.

And fuck.

And that is when, in the deviously quiet way in which stigma operates, all hell broke loose. We built social fortresses to separate Us from Them. We didn’t have to bother labeling one another because the disease did it for us, creating an HIV hierarchy that started with “positive” and “negative.”

The more HIV treatments improved, the wider the viral divide became. Our mutual resentments and jealousies worsened. As the physical scars of AIDS faded—the skin lesions, the wasted faces—our anxiety level rose as HIV status became less apparent. You can just imagine the frustration of the discerning gay man, no longer capable of telling the positive from the negative. Where’s the comfort of stigmatizing someone when you can’t tell who they are?

Today, our attitudes about HIV and other gay men range from self-righteousness to outright contempt. From whatever our vantage point, we have shamed and stigmatized everyone else into a corner, and the result is a community in revolt against itself. We are a snake eating its tail.

It might be easy to doubt this gloomy view of the gay community. None of us like to believe ourselves guilty of treating “the other” badly. The only thing we admit for sure is that we have been mistreated and misunderstood. Our self-interest is telling.

Maybe the problem is that, beyond the convenient anonymity of online hookup sites or mobile apps, you don’t usually see HIV stigma in all of its black-and-white ugliness. You don’t hear its voice.

Stigma GrabListen closely to the ugly words of stigma. A special version even exists for the newly diagnosed.

Gay men who get infected today are out of their minds. They are the failed ones, the grave disappointments, the apathetic, the careless, the irresponsible. They spit upon the memories of our courageous dead. They have no respect for our history, for our monumental tragedy.

We might make motions to comfort them, but it is the kind of patronizing back-patting that we reserve for the truly stupid. We tell them they will be fine, really, and we don’t look them in the eyes for very long. Our weary judgment shows.

Never mind that they are guilty of nothing more than being human, of being in love or getting drunk or trusting the wrong person or saying yes when they should have said no. Their weak excuses will be met with furrowed brows, and their dating life will wither. They will be marked and socially downgraded. They should be ashamed, and something inside us hopes that they are.

Do you hear it? Keep listening. There is so much more to say.

Before long, those newly diagnosed will join the promiscuous ranks of sexually active HIV-positive men. They are the unclean ones, the barebackers trolling the Internet, the murderers with tainted blood on their hands, the crystal meth addicts lounging in bathhouses with the door ajar. They are the unrepentant, the whores, the vile merchants of death.

Never mind that these men struggle to disclose their status, that they are routinely rejected socially and sexually, that their waning self-esteem is being strangled by our judgment, that sometimes their lives feel so forsaken they settle on whatever community will have them. The fact that stigma and depression often lead to escapist behavior is of no interest to us. We fear they could be having more sex than we are—hotter sex maybe—and the chance it might not be hurting anyone is infuriating. They should be ashamed, and we will make damn sure that they are.

The lowest rung of the gay HIV hierarchy is inhabited by older gay men who have lived with the virus for decades. They are the dependent ones, the sunken-faced humpbacks cashing their disability checks and wiling away their days sipping coffee in Café Disabilité. They are the aging invisibles and the sexually worthless.

They try to mask their feeble wasting with testosterone injections and protein shakes and facial fillers, but we know the truth. We see. They remind us of our darkest days, these unwelcome relics, and though we ignore them their haunting persists, in the daylight of the grocery store and the darkness of the bars. We avert our eyes and anticipate their extinction.

Never mind that they were among our earliest activists, our courageous long-term survivors, the men who scrawled words like “empowerment” and “advocacy” across the bureaucracies of their time. Forget that they have seen death in obscene quantity, that whatever joy they possess is a triumph of spirit. They should be ashamed, but we don’t regard them with enough interest to care.

Do the words sound familiar at all? Do you hear the voice? It isn’t nearly done.

Take a hard look at HIV-negative gay men. They are the superior ones, the corrupt morality police, the hypocrites, the gentlemen in waiting. Above all else they are the supremely lucky, because they can’t possibly live by the crushing code of conduct they impose on the rest of us.

They reject us as damaged goods. They promote how “drug and disease free” they are. They publicly advertise their outdated HIV results. They tell us we would make better friends than sex partners and then they don’t call again. They find clean, disease-free love with other, similarly superior men so they might have a life out of reach of the great unwashed.

Never mind that they have successfully avoided infection thus far, that they have buried friends and comforted lovers, that they withstand the unnerving ritual of HIV testing and worry about whether or not they will pass or fail. And please, pay no attention to the fact that they fear HIV stigma at least as much as positive men do, which is one compelling reason they hold tight to their negative status with such fervor.

None of their circumstances can excuse their indictment of the rest of us. We marvel at their lack of shame, and wonder bitterly if their attitudes might change if they became infected.

At least they don’t suffer the same wrath as do HIV-negative men taking Truvada, the HIV medication used as a pre-exposure prophylaxis, or PrEP. They are the traitorous ones, thumbing their noses at their elevated negative status by intentionally dipping themselves in the viral soup of casual sex. They are obviously barebacking infected guys or they wouldn’t be popping pills that blunt the consequences of being a poz-loving slut.

And God help those who don’t admit they are infected and have sex with a negative person, because they are the criminal ones, the terrorists, the dangerous liars who must pay dearly for what they’ve done. They belong in jail and off the streets, like drug dealers and rapists.

Never mind that, for reasons we all well know, they can’t always bring themselves to disclose, that they may use condoms, that they may be adherent to their meds and undetectable, and that no single case of an undetectable person transmitting the virus has ever been verified. Disregard the fact that conservative lawmakers and prosecutors are more than happy to exploit our thirst for vengeance and lock up some diseased fags who dare to have sex at all. Forget that during the first years of AIDS, when the virus reliably killed you, those who became infected took personal responsibility and called their doctors to start treatment and not the police to press charges.

POZ Stigma CoverThat is the sound of stigma. It is bitter and rageful and terribly afraid. I can hear my own tones in it, like a voice in a chorus, when it says the words I would never admit to thinking. Do you hear your own?

Gay men have known since the AIDS pandemic began that empowerment is the antidote to stigma, that the more proactively we approach our health care and build support networks, the less stigmatized we feel. The answer lies in our refusal to be marked and shamed. But our own community challenges us at every turn.

Stigma operates exactly like the deadly virus we claim to oppose: It infects pieces of us and then turns those factions against the rest, until the entire body is weakened and vulnerable. We all know how that process ends.

That is what the gay community has become. We are AIDS itself.

When HIV disease is over—and some day it surely will be—our jubilation will be beyond all imagining. We will have finally put an end to the health crisis that has plagued us for generations, a crisis that polarized nearly everyone, most particularly us as gay men. And once the celebrations fade, another equally important moment will come.

We will take a look around at our friends and lovers on both sides of the viral divide—at all of our brothers whom we stigmatized for one reason or another—and our old judgments will be transformed to a deep regret. Hopefully, in that moment, a certain kind of grace will emerge. We will clearly see the deep, private wounds of HIV stigma, and we will finally allow that we are all simply and imperfectly human. And then everyone will have some explaining to do.

It wouldn’t be too soon for that moment to happen now.

Mark

(This article originally appeared as a cover story in the June, 2013 issue of POZ Magazine but has never been posted on my blog until now. It remains one of my proudest moments as a writer. You can view my remarks about writing this piece, presented at the 2013 International Conference on Stigma, here. Photos: Jonathan Timmes Photography.)

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Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, Prevention and Policy | 4 Comments »

The Challenging Web Series That Travels from ‘Unsure’ to ‘Positive’

Thursday, March 17th, 2016

In the gorgeous and sometimes maddening web series Unsure/Positive, we follow the life of a Boston gay man, Kieran, literally from the moment he gets his HIV positive test result. Kieran’s journey in the six-episode first season (available for only $3.99 on Vimeo) covers some difficult terrain – shame, disclosure, sex and drugs – and many HIV positive guys and our friends will identify with it.

This is poz-adjacent art that is absolutely worth your time and a few bucks, most particularly because it doesn’t beg for your affections. It is messy and sad and hilarious and sometimes impenetrable. Like life.

I must also mention that this series contains a five-minute conversation about crystal meth that might be the best writing on the topic I have ever witnessed on the screen. For anyone with an addiction background or who is trying to understand someone with one, those few moments alone are worth your time.

I spoke with series creator, writer and star Christian Daniel Kiley, and he is every bit as earnest and enthusiastic as one might hope a young new talent might be. We chatted about the show, bad gay movies, John Updike quotes, meth-driven orgies, and the fact something in his show absolutely pissed me off.

First of all, Unsure/Positive is beautiful. It has the production value of network television. I want to challenge you on some of it and we’ll get to that, but there is artistry and a story here that is immediate and compelling. And the emotional payoff in the final episode blew me away.

Mark, stop making me blush! And thank you for saying so. We were very careful to keep the production values high, because we wanted to make something with the potential to go mainstream.

You succeeded. And no need to be modest! You’re doing your thing, Christian.

Part of the reason that the show looks so good is because we threw all the money we raised right at the screen. The downside to that is we didn’t budget in a dedicated publicist. So our show has polish, yes. But at this point we’re reaching only a fraction of our potential audience.

BEHINDTHESCENES

Christian on set during the filming of Unsure/Positive.

You wrote, produced and starred in Unsure/Positive, and I’m assuming the storyline of a newly diagnosed gay man is very close to your personal one. Why was your own story something you felt so strongly about telling?

Well, after I was diagnosed in 2007, I made a choice not to tell anyone about it. My friends were in the dark, my family was in the dark. Where it took (lead character) Kieran three months to come out of the closet, it took me more like three years. I think the post-diagnosis anxiety and depression — once I had recovered from it enough to see it for what it was — was actually the most damaging aspect of testing positive for me.

A writer, maybe John Updike, once said that a writer must believe their life is interesting.

I think Updike also said something like “willingness to risk excess on behalf of one’s obsessions, is what distinguishes artists from entertainers.” Although I actually don’t think that artists and entertainers are mutually exclusive labels.

I’m furiously Googling for more John Updike quotes, as you clearly are doing as we speak, so I give up.

I just found this one: “He skates saucily over great tracts of confessed ignorance.” That’s Updike, referring to another author.

My first grade teacher wrote on my report card that I “skipped nicely to music.” Now I wish she had said I “skipped saucily.” Either way, she had me pegged.

I’m surprised she didn’t say you “skipped gaily.”

Shut up. You don’t know me. Anyway, I have this theory that “gay art” typically sucks. Gay movies are usually not very good, gay plays can be awful, and even gay restaurants have better cruising than cuisine. And we’re supposedly the most creative people in the world! Maybe we become self-conscious or something. Is that fair?

Yeah. I’ve seen a lot of pretty bad stuff in the LGBT section of Netflix. But you have to consider the exceptions, like Tony Kushner. On the other hand, Eating Out is like, worse than Tyler Perry movies. Then you’ve got something like The Outs, a very popular web series that my friend Adam Goldman produced.

I was going to mention Eating Out but I didn’t want to trash anything specifically. God, you’re such a hater.

I’m not a hater, Mark! I swear! I just hate things, like, when appropriate.

KIERANALLIELIVINGROOM

Kieran’s best friend and confidant Allie is played by the marvelous actress Amy DePaola.

You mentioned how tough it has been to not only produce Unsure/Positive, but for it to find an audience. Okay, I guess some idiot blogger that says “gay art sucks” doesn’t help very much. But this series absolutely deserves an audience. Where the hell are they?

It’s been a struggle, yeah, to grow our audience. The audience we have so far is very engaged. I get emails and texts every few days from someone new who watches the show and wants to reach out. We make that pretty easy on our website. And that is, without a doubt, awesome. But it’s also a slow burn, and there’s no budget for publicity.

I also have a theory that people, even HIV positive people, see a series about HIV and think “let’s put a pin in that, yeah? We could watch the new John Oliver.” I do that all the time.

Your show shares some creative bandwidth with another web series with a gay HIV positive lead, the musical comedy Merce. The similarities end there. Merce is a low budget romp with enormous heart and silly giggles.

I really love Merce! It’s funny, Merce was released while I was still in post-production for my show, and it sort of took the wind out of my sails when (Merce creator) Charles Sanchez beat me to the punch with an HIV-positive protagonist. I actually asked Charles to consider a crossover — doing a cameo as Merce, out on a date with Kieran. We’re always thinking of ways to expand laugh potential in season two!

Speaking of big laughs, Kieran in Unsure/Positive has a history with the drug crystal meth. Personally, I’m grateful the topic continues to crop up, in books like Lust, Men and Meth, in new actions from ACT UP New York, and Danny Pintauro has been writing about his own meth history. I was a meth train wreck for so long. Its grip on our gay friends is just so heartbreaking and it hasn’t let up at all.

Well, Mark, I must say that I have drawn a fair amount of inspiration from your previous writings about your addiction. I would go as far as to say that, had I not stumbled upon your internet presence back in the day, my show wouldn’t have gotten made in the first place.

Shooting the scene (of men using meth together) was one of the most incredible experiences in my life. I mean, here I am, a former user, explaining to a roomful of actors and crew exactly how meth orgies amongst gay men go down, and finding real catharsis in doing that and maintaining my professional wherewithal. I feel so much more in control of my addiction and recovery after putting myself through those paces.

My sponsor would slap my face and ship me off to rehab if I even considered recreating a meth sex party, even a fictional one.

Well, I certainly understand that. I was never a “heavy” meth user, as I understand it, but I was in deep enough that it ruined a few years of my life. Still, you’d be surprised what confronting your triggers can do to disarm them, at least for someone like me.

Trust me, I don’t need to be testing my triggers, even to disarm them. I’m a true addict, to the bone.

Fair enough.

LISADEILYANDOTHERS

Moments after his test result, Kieran already feels the self-consciousness of the newly diagnosed.

Let me tell you what bothered me before I tell you what infuriated me. I felt like Kieran moped around too long after testing positive. I wanted to slap him. I wanted him to open up to friends. But then, when he finally does, it is so emotional and traumatic for him to admit that I got all choked up. Who the hell wants to admit they just tested HIV positive in 2016? Someone testing positive today is treated like a personal disappointment and a public health failure. So your storyline made me check myself.

I’m glad to hear that the series made you reconsider your original impression of Kieran. I think he’s a character who, for better or worse, is a depressive. It was, for the record, a deliberate choice to make Kieran so ambivalent that an audience would question whether they like him. But (poz activist hottie) Jack Mackenroth, for example, told a friend of mine that he only watched the first couple of episodes and then he stopped because he thought the character was a jerk.

Do not fuck with my sister-from-another-mister Jack Mackenroth. He will cut you.

I wish he had given the entire show a chance. It’s only 55 minutes long!

Try to get a hold of yourself, Christian. We have an even larger chasm to cross. There is a twist in the finale that I guess I shouldn’t reveal. But it made me so, so mad. I refuse to discuss it! But I’m still mad.

I want the controversy. I think any show that has people talking about it around the water cooler is doing something right.

OK, fine, we won’t discuss it at length during this interview. We’ll take it outside when we’re done and settle it like men.

What kind of men?

Never you mind, Missy. Forget it. I forgive you because anyone who reads my blog knows how much I love the intersection of HIV advocacy and art, and your show is a wonderful example of that. All my best, Christian! And more sex in season two, please. Sober sex.

Sober sex is already in the outline!

Halleluiah!

 

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Posted in Family and Friends, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News | No Comments »

I Discovered My Brother Was Gay from The Advocate Magazine

Tuesday, March 8th, 2016

It was 1975 and I was 14 years old, all gangly limbs and stubborn acne, and I was sitting in the passenger seat of a parked car.  Splayed across my lap was the magazine, open to the page my companion had selected. I was staring at the photo with something like revelation.Boy Meets Boy album

“I wasn’t sure if I should show this to you,” he said. He was a little nervous. “But I think it’s wonderful.”

He had the exquisite name of Pericles Alexander, and was once the arts critic for The Shreveport Times, my hometown paper. Now, in his retirement, he had found a willing pupil in me, a teenager that loved working on summer musicals while secretly grappling with my own emerging sexuality.

Pericles was a kind mentor, nothing more. He drove me to local plays and regaled me with stories of Broadway actors and theatrical gossip. We would huddle together in the dusty seats of our community theater, me hanging on to his every whispered word as the house lights dimmed for the latest production.

When he parked his car in front of my family’s house that night after a show, he quietly pulled the magazine out of a plain brown envelope. He thumbed through it while I watched, suddenly nervous about what the pages might reveal, and then he handed it to me. I set the magazine in my lap and my eyes quickly grew the size of serving platters. Never in my young years had I seen anything as startling as the image before me.

There were men in the midst of a musical production number of some kind, and they were all nearly naked. Among them, the unmistakable and familiar face of a man, grinning buoyantly, with nothing but a bedazzled butterfly the size of the palm of my hand covering his crotch.

That man, the one with the rhinestone butterfly as a makeshift jock, was my older brother, Richard. And he looked triumphant in his grand pose.

Richard King, at left

I forced my eyes away from Richard and scanned the page for an explanation. The article was about Boy Meets Boy, an off-Broadway sensation set in the 1930’s that adopted the spirit of an old Fred Astaire and Ginger Rogers musical. Except that, in this story, there were two Fred Astaires and no Ginger Rogers.

My brother is in a gay musical in New York City, I marveled to myself. My brother is nearly naked. My brother is in a glossy magazine. My brother is nearly naked.

“Are you alright?” Pericles asked.

“Sure,” I said tentatively, and I flipped the magazine over to its cover. The Advocate, it said. The National Gay Newsmagazine.

I had never heard of such a thing. My own struggle to accept myself was purely internal, and often in conflict with nearly everything I witnessed or read growing up in Louisiana. My southern instincts suggested the magazine must be perverse, but something inside me knew better.

And my mind was still trying to process that photo of my brother, captured in an outlandish moment, yes, but performing on stage and doing what he loved. Even if he had never mentioned the show to me during one of his phone calls from New York, much less come out to me.

Richard and I weren’t close, not yet. He was fifteen years older and had left home to pursue his acting dreams by the time I was a toddler. Many years later we would both find ourselves living in Los Angeles and that gave us the chance, finally, to carve out a loving friendship as adults. But in that moment, as I sat in that car in the dark, Richard was simply a happy gay man frozen in an outrageous pose of defiance and joy.

“I think appearing off-Broadway is really impressive,” Pericles offered. “So I thought you would enjoy this. But… maybe you better not take this inside.” He gently slid the magazine from my grasp. He returned it to the brown envelope and tucked it beside his seat.

“Sure, okay,” I answered, and I reached for the door.  My head was swimming. “Thanks, Pericles. Yeah. I’m excited for him.” And that much was true.

I trotted inside and gave my parents a report about the play I had just seen, parroting the review Pericles had given me on the ride home. And then I went upstairs to bed.

I slept soundly that night, my dreams filled with theater and music, butterflies and rhinestones, and an unfamiliar but comforting emotion.  It felt like the inauguration of a special kind of pride.

Mark

(I was invited to write this for a special issue of The Georgia Voice by its new editor, Darian Aaron.  Darian is killing it down there in his new position. — Mark)

PLUS…

IMAG1614Even with so-called “permanent fillers” to treat facial lipoatrophy (facial wasting), the product loses a percentage of its volume over time. So, whenever I am in southern Florida I pay an occasional visit to Dr. Gerald Pierone to let him adjust me a bit, as I did earlier this month (that’s Dr. Pierone at right, in his new Orlando satellite office, with his assistant Aime Evans). The topic remains the thing I am asked about most often because facial wasting affects so many long time survivors of HIV, and I want to be transparent about the fairly dramatic change in my face over the last years. You can watch Dr. Pierone’s treatment — and see the striking before and after photos — by checking out my video blogs of my treatment.

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Posted in Anita Mann and Acting Gigs, Family and Friends, Gay Life, My Fabulous Disease, News | No Comments »

16 HIV Advocates to Watch in 2016

Wednesday, January 6th, 2016

They come from nearly every corner of the world. They are engaged in local communities and on the international scene. They include mothers, artists, a fugitive, a performer, and a drug smuggler. They are speaking out, acting up, and in some cases risking their personal safety and liberty.

All advocates

(Photo illustration courtesy of PLUS Magazine.)

They are the 16 HIV advocates to watch in 2016, and they inspire and humble me. It is such a privilege to share their stories with you and highlight their important work. Their twitter handles and other social media links are included whenever available; I urge you to follow them so these advocates can inspire you all year long!

And now, it is my honor to present…

Joshua Middleton
Big Bear Lake, California

Joshua MiddletonStraight men living with HIV aren’t unicorns. They do exist. But being public about their status means facing an additional layer of ignorance. Joshua Middleton has every intention of changing that. “I’m putting a face on the heterosexual HIV positive male that is often silent in this fight against HIV,” says the 25-year-old Californian. “I want to show the world that there is always hope.”

Joshua has started his own blog, contributes to TheBody.com,  and has dived into the HIV advocacy arena with vigor and youthful enthusiasm. He has become an avid supporter of PrEP, uses his fluidity in multiple languages to share HIV messages, and wants to pursue a law degree for the express purpose of defending those being unfairly prosecuted by HIV criminalization laws.

“He is a loving soul,” says Maria Mejia, the popular social media personality and HIV positive advocate. “He represents a new generation of activist and I am always so proud to see a young heterosexual male stepping out of the HIV closet.”

“Sitting on the sidelines is not an option for me,” says Joshua. “I’m going to be a driving force until the day when HIV becomes yesterday’s news.”

 

Kenny Brandmuse
Lagos, Nigeria

Kenny Brandmuse credit olubode shawn brownIf and when Kenny Brandmuse returns to his home of Lagos, Nigeria, the reception might not be a welcome one. Shortly before he left two years ago (escaped might be a better word), he was receiving threatening phone messages from anonymous strangers. “They wanted me punished for my sexuality,” says Kenny. “I was already being investigated by the court, and I had to stop attending the hearings because the unfriendly crowds outside the court were becoming larger.”

The threat to his safety became too great, so Kenny managed to get to the United States by seeking an advanced degree at a Baltimore college. Then he found the ideal job – and a work visa – with the Baltimore Health department to design programs for gay black men that address HIV stigma. He loves the work but can’t help but feel anxious about the future, once the visa ends. “It’s like walking on needles,” Kenny says.

Part of his troubles in Nigeria were due to Kenny being an outspoken gay men living with HIV. Kenny founded Is Anyone In Africa?, an online community for African gay men and those living with HIV. It has helped over 500 men and women receive care without fear of being outed since being launched only one year ago.

For 2016, Kenny has a simply goal: to see a more empowered gay community living in homophobic Sub-Saharan Africa.

Pioneering African gay rights clergyman Jide Rowland Macaulay, founding pastor of House of Rainbows, has a unique understanding of Kenny’s journey. “Kenny coming out about his sexuality and HIV status has made many of us come to a place to be realistic and reconcile the odds against discrimination,” Jide says. “As a child of Nigeria, he has by default positioned himself carefully as heroic, it is my hope that the nation would find in her heart to celebrate him.”

Whether or not Nigeria is ready to celebrate the return of Kenny Brandmuse remains to be seen. His work visa expires in 2018.

(Photo credit: Olubode Shawn Brown)

 

Greg Owen
London, England

Greg OwenIf the photo of Greg Owen strikes you as sexually provocative, then he’s just doing his job. The London-based advocate likes starting conversations about sex. “It is incredibly important for us as gay men to remain not just sex-positive but to keep reaching and working towards a complete sense of well-being. Emotional, mental, sexual and social,” says Greg. “When we are looking after ourselves, we become more resilient in dealing with the curveballs that life sometimes throws.”

Greg faced a major curveball only months ago, when he decided to begin taking PrEP himself (because Truvada as PrEP isn’t yet available in the United Kingdom, Greg acquired the drug from a friend who had stopped taking it as an HIV treatment med). Everything was in place, until Greg got tested before beginning PrEP and discovered he had become HIV positive since his previous test. His own decision to start PrEP was just a few months too late. His idea to write and share his own “PrEP Diaries” instantly became his “Diagnosis Diaries.” His activism did not skip a single beat, culminating with his popular site, “I Want PrEP Now.”

Gus Cairns, the enormously influential editor of AIDSMap, is duly impressed. “What I particularly like about Greg is that although he knows what he’s doing, he is conspicuously not a saint,” he says. “He knows instinctively that the best way to sell HIV prevention is via sex, not by finger-wagging about it. He lives his life rather nakedly in public and is both an inspiration to others but also, now and then, a burden to himself because of it. I follow his activist career with a paternal eye.”

 

Joey Joleen Mataele
Nuku`alofa, Kingdom of Tonga

Joey Joleen MataeleIn Tonga, when a transgender person (known as “leiti”) is seen walking down the street, someone might use a cruel shorthand to refer to them. They simply call them “AIDS.” It is in that discriminatory environment that Joey Joleen Mataele founded the Tonga Leitis Association in 1992, and she hasn’t stopped fighting for her community ever since.

An active figure on the HIV awareness scene, Joleen has witnessed firsthand the harassment and discrimination suffered by LGBTIQ people in Tonga and the South Pacific. But Joleen had a not-so-secret weapon: her own visibility as a singer and entertainer. “The culture of the pacific is open to humor, song and dance,” Joleen says. “So, I founded the Miss Galaxy Queen Pageant to raise awareness and to support our community.” The pageant event became an enormous phenomenon, raising crucial funding and even garnering the support of Her Royal Highness Princess Salote Lupepau’u Tuita.

Joleen, who is also raising five adopted children at home, is just as ambitious in her goals for 2016. “I want to strengthen the Tonga Leitis community advocacy to effectively address the health, rights and well-being of Tongans and Pacific Islanders of diverse sexual orientations and gender identities,” she says, “and to provide an inclusive environment that celebrates diversity in all forms.”

“Joleen has been a beacon of hope for those living with HIV and AIDS in the region,” says Resitara Apa, former secretariat of the Pacific Diversity Network.  “She works to ensure that the people of Tonga are educated about HIV so they stop discrimination and start caring and loving those living with HIV. Keep an eye out for her in 2016 and see her make changes for those who have no voice.”

 

Kamaria Laffrey
Winter Haven, Florida

Kamaria LaffreyThe Positive Women’s Network USA (PWN USA) could easily generate an activist list of their very own, considering how ferociously powerful the organization has become in recent years. One advocate who has benefited from their inspiring female power is Floridian Kamaria Laffrey.

“More and more women are coming out of the shadows,” Kamaria says, “and helping to break down misconceptions of HIV.” Her work with PWN USA, We Make the Change Florida, and as part of a strategy team with The SERO Project to repeal criminalization laws, is keeping her schedule brimming with advocacy activity. “I am continually fueled to find ways to share purpose beyond pain when issues of criminalization, reproductive injustice, and overall stigma prevent people from seeking treatment, staying in care and living the abundantly full life they deserve.”

Kamaria credits her religious faith for getting her through her diagnosis in 2003. “Being a woman of faith has often made me feel torn in what I view as a really sensitive culture. In the faith arena, I feel that many layers of HIV aren’t addressed, just those that feel less controversial,” she says. “And outside of the faith world, I sometimes feel as though I am not taken seriously because of my beliefs. But I have hope for change.”

In 2016, Kamaria will be focused on making her organization emPOWERed Legacies officially a non-profit, completing her book, Chasing Waterfalls, and making a mission trip to Haiti.

Tami Haught, the SERO Project Training Coordinator who led the fight that successfully updated Iowa’s HIV criminalization laws, believes Kamaria’s spirit may be her most valuable tool as an advocate. “Kamaria has so much energy, her smile lights up a room,” Tami says. “Her spirit and resolve are inspiring, and she is a power to be reckoned with in Florida.”

 

Nicholas Feustel
Hamburg, Germany

Nicholas FeustelGerman activist and filmmaker Nicholas Feustel is committed to his PrEP advocacy body and soul. In fact, with no other options available, he is using his body as a quality control measure.

Nicholas has already made an enormous contribution through his video production work, creating documentaries on HIV criminalization, prevention, and living with HIV. But it was the advent of PrEP that re-energized his efforts, leading to his documentary on the groundbreaking PROUD study on PrEP. Even so, he still saw roadblocks to bringing the drug to Germany.

“I realized there is a big language barrier,” Nicholas says. “All the latest and useful information comes out in English first. So I translated articles, wrote my own, and launched the first German website on PrEP. I’ve been trying to make people here in Germany understand what PrEP is all about, that it is so much more than just taking pills.” As a direct result of Nicholas’ efforts, Germany’s leading AIDS service organization, Deutsche AIDS-Hilfe, is pro-PrEP after a period of skepticism.

But a huge barrier remained: Truvada as PrEP is not approved in Germany. That’s when Nicholas got really creative.

Nicholas learned he could legally import, without a prescription, a generic version of Truvada from India if it was shipped to the United Kingdom. He retrieved it there, began the regimen himself, and then had his blood levels tested for Truvada’s active ingredients to be sure the generic version was legit. It was. Anyone familiar with early HIV treatment activists leaving the country in pursuit of effective medications will appreciate Nicholas’ ingenuity.

Edwin Bernard, the internationally renowned coordinator of the HIV Justice Network, holds Nicholas in a special kind of awe (in a match made in HIV advocacy heaven, the two are longtime partners). “Nick always goes the extra mile in his PrEP advocacy,” Edwin says, “including turning his own body into a political petri dish and posting his own drug blood levels online whilst on cheaper generic Truvada.”

 

Ian Bradley-Perrin
Montreal, Quebec

Ian Bradley-PerrinThe staggeringly intelligent Canadian Ian Bradley-Perrin likes to figure out how systems work – and why they allow access to certain people while others are left behind. Lucky for us, the PhD student in Sociomedical Sciences at Columbia University in New York is applying it to the healthcare of people living with HIV.

“I’m interested in how social movements shape who gets a seat at the table of policy making,” says Ian, “and how class, gender, race, and health intersect to produce particular understandings of the needs of HIV+ people.”

Ian is also fascinated with the history of the HIV epidemic, and the “historiography of AIDS” in particular. “It’s the study of how the history of HIV/AIDS and the artistic and symbolic products of activism around the issue get written,” he says. “What are the narrative trends, tropes, and what is missing. Essentially, instead of just the story of AIDS, it’s the history of the way we tell the story of AIDS.”

Ian will publish much of this in various papers in 2016. He will present on the topic of stigma and public health at Columbia this year, and is applying his knowledge to an initiative investigating community organizations in the Deep South and how the CDC funds them.

“Ian has an incisive ability to see the interconnections between the disparate social, cultural and policy implications of living with HIV in a post-HAART world,” says Avram Finkelstein, founding member of the Silence=Death and Gran Fury collectives. “He has already done significant work around HIV criminalization in Canada and spearheaded complex conversations about the recent attempts to construct an HIV/AIDS history in the midst the pandemic.”

 

Midnight Poonkasetwattana
Bangkok, Thailand

Midnight PoonkasetwattanaIf you talk to anyone who works with communities at HIV risk in the Asia Pacific, the conversation will quickly turn to the work of Midnight Poonkasetwattana, the extremely busy head of the Asia-Pacific Community of MSM Organizations (APCOM) in Bangkok, Thailand. In a region in which a huge portion of new infections are among gay men, he has his work cut out for him.

“At the heart of HIV response is the need to recognize the rights of people regardless of their sexual orientation, gender identity and expressions,” says Midnight. “As a gay man this is important to me. In the Asia Pacific region, gay men and men who have sex with men (MSM) will account for 50% of new HIV infection in 2020 – we only have a small window to avert this.” APCOM has stepped up HIV testing and outreach to younger MSM and transgender youth.

“What keeps me going is the desire to see change,” Midnight says. “I want to see strong community organizations that are being recognized and treated as experts; not just as rhetoric that we normally hear. I want to bring in new and younger people to the movement to form new responses and ensures that we keep apace of the changing dynamics and that we are changing hearts and minds.”

Chris Beyrer, the current (and first openly gay) president of the International AIDS Society, has great confidence that Midnight will be a force for change in 2016. “Midnight is a dynamic emerging leader,” says Chris. “He is leading the community charge for sex positive PrEP programming in the region—where not a single Government is currently providing PrEP through national health systems. He’s out loud and proud, and a great voice for our global community.”

 

Lizzie Jordan
Gainsborough, Lincolnshire

Lizzie JordanNearly ten years ago, Lizzie Jordan became a mother, a widow and tested HIV positive all within an 18 month period. So, she left her London fashion career and returned to rural Lincolnshire to be near her family. She did not yet know that her personal tragedy was forging an activist with an important purpose.

As a single mother to a grieving child, Lizzie wanted to find resource and training for her child’s primary school. How could she help her child’s teachers, much less her classmates, learn to speak openly and compassionately about HIV?

Joining forces with friend Naomi Watkins, the pair sought to do something about the “uncomfortable silences” young people often felt when discussing sensitive subjects with the professionals involved in their lives. After months of planning, their agency Think2Speak was founded to provide age-appropriate guidance and support on issues such as mental health, bereavement, abuse, and yes, HIV and sexual health.

In the year ahead, Lizzie is “looking forward to working with schools, throughout the UK, encouraging young people, and those working with them, to learn and discuss responsible sexual health.”

Tom Hayes, the activist and editor of the online magazine Beyond Positive, is both a friend and a fan. “Lizzie is a great advocate because she has such passion for what she does” Tom says. “She’s such a kind, warm and generous person. She set up think2speak all whilst running her own marketing company. Impressive isn’t the word.”

 

Robert Garofalo
Chicago, Illinois

Robert Garofalo credit Jesse FreidinWhen you visit the Twitter page for Robert Garofalo, it isn’t really a page about him. It’s all about his dog, Fred. And that is the first thing you need to know about Robert’s activism.

The Professor of Pediatrics at Northwestern University has devoted his career to the care of HIV+ adolescents and has done a fair amount of HIV prevention interventions for young men who have sex with men and young transgender women. But let’s get back to the dog.

Robert founded Fred Says to raise money for agencies across the country that care for HIV+ young people. “I wanted to do something that was personal and creative,” says Robert, “and that tapped into the gratitude I had for my dog, Fred, who quite literally saved my life after my own HIV diagnosis in 2010.”

The photo essay project When Dogs Heal, launched in 2015, was the result. “Our hope was to change the narrative about HIV to be about love, hope, survival and thriving while living with HIV — all while giving credit to the healing powers of our pets,” says Robert. “Our hope in 2016 is to turn When Dogs Heal into a traveling art exhibit and to turn the project into a book.”

Charles Sanchez, the writer and star of the web series Merce, which features a lead character living with HIV, knows a little something about employing creative talents as an advocacy tool. “Sometimes a dog is more than just a man’s best friend, but also his best medicine,” says Charles. “Rob’s project has the potential to change people’s minds about what someone with HIV looks like. His work inspires me.”

(Photo credit: Jesse Freidin)

 

Charlie Tredway
Auckland, New Zealand

Charlie TredwayCharlie Tredway has experienced his share of HIV stigma. “I’ve had people using my positive status as a weapon against me and been abused online and felt undateable,” says the activist and staffer at the New Zealand AIDS Foundation. His response, though, has been to only increase his visibility as a person living with HIV. As far as Charlie is concerned, the strategy has worked. “Since going public it has weeded out the ignorant,” says Charlie. “The only way to combat that stigma is through honesty and making HIV personal and visible.”

Charlie has personally backed up his theory, working with the Aussie organization The Institute of Many as a senior moderator and appearing in their cheeky “Wizards of Poz” social media campaign (as Dorothy, no less).

Coming to this place of transparency hasn’t been an easy yellow brick road for Charlie. “I didn’t have proper follow up after my diagnosis and wasn’t engaged in any services or support or linked into adequate care. I just completely dropped the ball because I felt healthy.” Only after several years did Charlie turn things around. And it was then that he realized that no one could make him feel badly about himself without his consent.

Looking back, Charlie turns a critical eye to New Zealand’s policy of not treating HIV patients until their t-cell count falls below 500, something he feels may have kept him from care for too long. “It is stupidity of the highest order,” says Charlie. “Not only does it going against WHO recommendations, it also takes away the HIV positive person’s right to take ownership of their health and start treatment.”

That kind of candor has been characteristic of his advocacy. “I am someone who consistently puts my foot in my mouth,” he says, “and yet I have a platform to speak publicly on important issues so there is always a small fear that I will cock it up somehow. Luckily, I have amazing mentors and peers who encourage me to focus on my own truth.”

Those mentors include Australian activist Nic Holas, the founder of The Institute of Many.  “What I admire most about Charlie is his tenacity,” Nic says. “He is a fiery little SOB who stands up for the little guy, but also challenges the victim mentality so easily adopted by many in our community.”

 

Diego Callisto
São Paulo, Brazil

Diego CallistoSince testing positive at the age of 18, Brazilian activist Diego Callisto hasn’t wasted any time making an impression. The driven young man with the piercing green eyes has focused them squarely on tracking and treating the HIV epidemic, quite literally around the world.

Diego is a member of the Youth Task Force of UNAIDS and the Y+ Leadership Initiative. Although Diego is still polishing his English language skills, his passion is crystal clear. “I promised myself following my diagnosis that I would devote to the fight against AIDS,” he says. “Even losing boyfriend and dear friends, I follow through, willing to find more strength and determination to have a world free of stigma and discrimination against AIDS.”

Diego sees HIV as a “human development problem” that must be addressed through programs like the Sustainable Development Goals of the United Nations global agenda. “HIV requires mobilization of all sectors of society and advocacy for human rights and to combat stigma and discrimination directly,” says Diego. “We must also strengthen discussions involving the implementation of PrEP as a measure of primary prevention in the context of combination prevention. PrEP is key to reducing new infections and is a great strategy.” Strengthening this agenda is his goal for 2016.

“Diego Callisto represents the new generation of AIDS activists,” says Mariângela Simão, Director of Rights, Gender, Prevention and Community Mobilization for UNAIDS. “As a young person living with HIV, he brings a very much needed message of hope to other young people living with HIV in Brazil. At the same time, he has brought the Brazilian voice to a different forum. We need more leaders like him.”

 

Cassie Warren
Chicago, Illinois

Cassie WarrenAll Cassie Warren wants for 2016 is a cute mobile van.

The Youth Health Benefits Counselor at Howard Brown Health Center is happy to explain, and with great persuasion, that a mobile van represents many of the issues relating to providing health care to young people. “I think if we want to make PrEP, hormones, and birth control more accessible to young people we have to reduce the number of things you have to do to get it,” Cassie says, “and we have to do it in a youth-centered environment. We have to bring it to them.”

But wait. Cassie isn’t done making her case. And she even broadens it. “There are a lot of folks out there who think young people can’t be adherent or don’t care about their health,” she says, “and those folks have absolutely no business providing care to young people. We need to look at the structural barriers and find ways to reduce and eliminate those.”

Cassie take her job helping young people navigate healthcare systems personally. “My work is rooted in a deep love for community and uplifting that love against systems that aren’t,” Cassie says. “Many young people experience trauma by the U.S. medical system. So, until we get real healthcare reform, you do what you can to create a safer space for folks to get what they need, and to feel celebrated and autonomous in their bodies.”

Jim Pickett, the HIV prevention advocate at AIDS Foundation Chicago who has a global reputation for innovation, is deeply impressed with his home town colleague. “Smart and tenacious, Cassie Warren is an advocate we all should be watching if we aren’t already,” Jim says. “Everything she does is rooted in a strong sense of community, social justice, and human rights. She’s equal parts thoughtful and fierce, and Chicago is so lucky she is here moving mountains!”

 

Bogdan Globa
Kiev, Ukraine

Bogdan GlobaIf you think it might be perilous living as an openly gay man promoting HIV awareness and treatment in Ukraine, you would be exactly right.

“I have felt unsafe for the last two years,” says Bogdan Globa, director of the Ukrainian charitable organization FULCRUM. “We have more radical people and political party. I’m regularly getting threats through the mail and on social media. Sometimes it feels hopeless, but I try to power through to my goals.”

Bogdan has put himself on the line before. In 1993, he became the first openly gay man to make a speech from the parliamentary rostrum of the Verkhovna Rada (imagine a gay men testifying to the Unite States congress). His remarks were candid and deeply personal. “Being an open gay at the age of 16, I went through all kinds of discrimination,” he said in his remarks. “I was bullied and abused in school, I got driven from my own family… I found the strength and courage to go through it, and today I use every opportunity to openly and honestly say to you about it. Unfortunately, a lot of young guys and girls do not find the strength to fight in the Ukrainian reality, and these stories may end with tragedies.”

Bogdan doesn’t want one of those tragedies to be further AIDS deaths, but there are enormous barriers in a country where being publicly gay can lead to humiliation, discrimination, or worse. “We are trying to change the legislation to have HIV testing at home which may attract more gays to know their HIV status,” he says. In 2016, Bogdan is behind plans to launch a home oral HIV testing kit, which he considers a “formidable breakthrough” in getting a handle on the epidemic in Ukraine.

“Bogdan has steadily and fearlessly campaigned for the rights of LGBT community in Ukraine,” says David Furnish, Director of the globally influential Elton John AIDS Foundation. “Most, if not all, improvements in LGBT rights in the last four years can be linked to his involvement.”

 

Masonia Traylor
Atlanta, Georgia

Masonia TraylorWhen Masonia Traylor tested HIV positive during a routine medical visit in 2010, she was simply shocked. She didn’t feel she was facing her own morality, though, as much as a “spiritual death.” She lived in such a state of anger, at having become infected, at every person she ever trusted, and even at herself as she second-guessed every choice she had made. It was a dark time that produced a surprisingly sunny advocate.

The 27-year-old mother of two has tremendous enthusiasm for her advocacy today, focused on population she relates to: youth at risk. It is widely known that in the United States, an estimated 1 in 5 people living with HIV do not know they are infected. What is less known is that among those living with HIV who are between 13 and 24, more than half do not know they are infected. It’s no wonder Masonia is so passionate about reaching them.

“Equipping youth with knowledge and awareness of the HIV/AIDS epidemic is what it will take to stop new infections,” Masonia says, who devotes her time volunteering for a variety of HIV agencies and maintaining an active presence on social media. “HIV is manageable, treatable, but most of all preventable.”

None other than the formidable Luvvie Ajayi, the social media sensation and founder of the Red Pump Project, believes Masonia has what it takes to deliver a message to young people. “Masonia has turned her pain into power by telling her story so others can know the faces behind the numbers,” says Luvvie. “She is one to watch in 2016 because her work is going to touch more lives and make more impact. I am so inspired by Masonia.”

 

Rick Rose
Shreveport, Louisiana

Rick RoseLongtime HIV activists don’t always slip gently into the background after having made their contribution a generation ago. Sometimes advocates like Rick Rose get a second (or third) wind and re-dedicate themselves to HIV advocacy.

On World AIDS Day in December of 2015, Rick was so inspired by the work of the Philadelphia Center in Shreveport, Louisiana that “I officially recommitted myself to the battle,” he says. Rick has lived in Louisiana for eight years, but his own HIV advocacy goes back thirty years. As director of the AIDS Mastery Foundation in Los Angeles in 1993, he worked hand in hand with the first Miss America to have AIDS as a platform, Leanza Cornett.

“Like many of us living in the throes of the pandemic, I needed a break,” Rick says. “That break lasted 19 years too long.”

Rick is focusing his efforts on the health disparities common in the South, and the impact HIV is having on communities of color. And that means frank conversations. “The South can no longer hide behind congenial traditions and mock religious beliefs,” Rick says. He’s also looking forward to documenting the stories of people at risk in the South through podcasts and other new media.

Miss America 1993, Leanza Cornett, remains a fan and a friend more than twenty years after her reign. “Rick is absolutely one to watch in 2016,” says Leanza. “Even now, he is spearheading round table workshops focused on women of color and HIV. I am so proud of Rick and his work, then and now.”

 

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Posted in Gay Life, Living with HIV/AIDS, My Fabulous Disease, News, Prevention and Policy | 2 Comments »

HIV+ Gay Men Have Their Say in “The Infection Monologues”

Wednesday, November 25th, 2015

A variety of gay men spill their guts about their lives and HIV diagnosis. They are bracingly honest, sexually explicit, heartbreaking and hilarious. They are the men of The Infection Monologues, a theatrical event getting a 10th Anniversary staged reading at the Human Rights Campaign this Wednesday, December 2, 2015.

The event is FREE, with food and drinks starting at 6:00pm and the performance at 7:00pm. You can RSVP right here.

Monologues Poster
I will be reading the role of Jack, the “older” member of the group of characters. I remember my ingénue days on stage as if they were yesterday, but I’ll save my existential crisis for another time.

Created by the enormously influential gay anthropologist Eric Rofes (Reviving the Tribe), and written by Rofes and writer and advocate Alex Garner, The Infection Monologues provides a snapshot of the lives of gay men living in the epicenter of the crisis, and is based on hours of real-life interviews.

Eric Rofes died far too soon, taken by a heart attack in 2006 not long after The Infection Monologues premiered. Alex Garner has continued a respected career as a journalist and HIV advocate, currently leading a national PrEP education effort for the National Minority AIDS Council.

Alex and I had a chat about the play, the politics of barebacking, gay “respectability,” and putting gay sex back into the social agenda.

First of all, Alex, congrats on having this work of art revived after ten years.

Thanks, Mark. We are excited to be able to breathe life into this script again. I always learn something new when I reread it.

Can I give a shout-out to the late, great, gay anthropologist Eric Rofes, with whom you wrote the play? His book Reviving the Tribe changed my advocacy forever. I recently read it again.

I can’t say enough great things about Eric Rofes. None of this would have been possible without his insight and vision. His impact is ongoing and his books changed me, too.

I invited Eric to lead a gay men’s town hall forum in Atlanta in the mid-1990’s. He was the first person I knew to say publicly that bareback sex was critical to his sexual experience. He said it that night, and it was like a bomb went off in the auditorium. I thought the attendees would riot.

Eric was ahead of his time but such a needed voice about gay sex and gay men’s health. Those early years of the bareback debate were so raw and emotional — no pun intended.

I’m wondering if the themes in The Infection Monologues have remain constant, or if we’ve seen any progress at all…

The themes remain constant in so many ways but the world has changed drastically. The themes of stigma, disclosure, dating/relationships, and sex are just as relevant and compelling today but scientific advancements — treatment as prevention and PrEP — have radically changed the landscape.

Alex HeadshotDoes it feel like something is missing not talking about PrEP, then? I think the stigma underscoring PrEP among gay men has really always been there.

I don’t think it feels like something is missing. I think it feels like a specific moment in time. The more things changes the more things stay the same. Much of the stigma associated with PrEP is the stigma associated with condomless sex. The bareback debate has simply evolved because of PrEP and unfortunately some PrEP users utilize PrEP as their shield of respectability: “I’m responsible” or “I’m protected so it’s ok when I bareback.” I have zero interest in respectability politics.

The voices in The Infection Monologues are such complete human beings. Funny, flawed, horny, scared. Tell me the process of how those voices came to be.

Eric was a great researcher and he conducted initial interviews of men who seroconverted after 2000. We used that research, as well as my own lived experience to create the three core characters. The additional characters were developed from writers in Los Angeles who drew from their lived experiences.

I’m all about telling the story of what happened to us — and what continues to happen. But these days it feels like so many of our wounds in the gay community are self-inflicted. Is that a fair observation?

I don’t think that is a fair observation. I don’t like that term. So much of our struggles are still institutionalized, whether it’s around homophobia and stigma, poverty, transphobia and sexism, lack of education, religion, etc. I believe we haven’t focused enough on our resiliency. As a community we endured the worst epidemic in modern history yet the lessons from that seem to be unknown. How did we survive? How did we find community, support, hope? How did we lose or find our humanity and how did we decide they were not going to destroy us. Ours is such a struggle of resistance and I think much of that has been understood simply in the modern marriage equality context.

Some advocates draw a straight line from the AIDS crisis to marriage equality. Do you agree?

I do see a straight line but not necessarily in the same way. The advent of anti-retrovirals allowed us to be healthy, presentable, and respectable. The movement could drop the messy, icky part and the part dealing with our sex, and focus on love and respectability. Strategically it was a brilliant move, but the impact was a desexualized movement. We now have the opportunity to make sex, pleasure and intimacy a top priority of our lives and our politics.

In my everyday life, I’m often torn between wanting to “tell the story” at every opportunity of what happened to us, and thinking I should just shut up already. Something about the trauma we experienced comes back to me, in some way, every damn day. So of course, the choice is to keep talking.

Who are we if not a collection of stories? That is art at its core and for those of us who have been marginalized, stories are a way to exert our humanity.

I’m honored I get to read the role of the “older” gay guy in the play. Actually, I’m actually older than the older gay character I am reading. Don’t get me started. I’ll use concealer that night.

(laughs) The “older” gay man is a very important perspective in the epidemic especially because he seroconverted after having lived through the war years. So much great complex emotion there.

Congratulations, Alex. It’s nice having a dialogue about the monologues.

Thanks. And I hope that others will explore creative ways to tell the stories of our complex and fascinating community.

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Posted in Anita Mann and Acting Gigs, Gay Life, Living with HIV/AIDS, My Fabulous Disease | 1 Comment »

How Do We Solve a Problem Like Pintauro?

Wednesday, October 7th, 2015

My discomfort began as I sat in front of my web cam, waiting to join Danny Pintauro in a segment on Huffington Post Live. Danny had recently announced on an Oprah special that he was living with HIV, which was big news for fans of “Who’s the Boss?” and those who loved the precocious little boy Danny played. Before my virtual entrance, Danny was telling host Nancy Redd how he was infected with HIV.

Grabbed Frame 1He wanted to explore “rougher sides” of his sexuality, he explained. And wouldn’t you know it, the first guy he hooks up with for that purpose offers him crystal meth. “And you combine meth, which completely ruins your immune system,” he said earnestly, “you combine having been up a good 12 or 13 hours… you combine that with some rough but safe sex, believe it or not, and it’s just a potent combination.”

My jaw dropped. Did Danny Pintauro just attribute his HIV infection to using meth and being tired? Did he just say that he had safe sex, “believe it or not?”

No, Danny. I don’t believe it.  While gay meth addicts are many times more likely to test HIV positive, it is because they engage in high risk behaviors, specifically unprotected anal sex, and not because they missed a good night’s sleep.

Danny went on to explain, or at least presume, that his sex partner’s viral load “had to have been very high, because that’s the easiest way to contract it if you’re not being unsafe.”

I was incredulous. I began to mentally prepare retorts to the celebrity. If you are not being unsafe, Danny, you will not become infected with HIV, regardless of your partner’s viral load. Prevention is a two-way street. Your partner posed no threat to you if you were being safe, which you say you were. Which is ludicrous because you were high on crystal meth, a sex drug known for evaporating condoms instantaneously. Statements like “we were safe, believe it or not” would be pure comedy gold at any Crystal Meth Anonymous meeting.

14616But I actually said nothing to challenge his statements.  When I appeared on the segment a few minutes later, I welcomed Danny to the world of poz activism and identified myself as a fellow meth addict in recovery. I then threw out an inane softball question to our newly-minted HIV positive celebrity/cautionary tale, because, well, he was on a popular sitcom and has the power to reach a lot of people. And because I totally wimped out.

We don’t always get the spokesperson we want. We have to work with the celebrity we are dealt (ask any transgender activist in this Year of Caitlyn). And it’s unfair to expect a random person with a celebrity past to be conversant on every aspect of HIV important to us. Besides, Danny’s messaging around meth and gay men alone is worthy of our gratitude.

It is also true that Danny has set himself up for criticism and public judgments. In a universally vilified segment on The View, one of the hosts, a breathtakingly clueless idiot named Candace Cameron Bure, challenged Danny to “take responsibility” for his actions, as if she had just nabbed an interview with the latest mass shooter.

If that was your last exposure to Mr. Pintauro, you’re probably feeling for him about now. So was I. That is, until he doubled down on his “I had safe sex” statements by telling US Magazine that not only had he been a condom-loving crystal meth addict, he was actually infected through oral sex.

I better take a breath here. Ahem. Okay. Moving on.

There’s no way to know the level of shame Danny Pintauro may be feeling around his addiction and HIV infection. And he must sincerely value his beloved place in television pop culture and hate to discolor it with his personal revelations. That took courage.

But attributing his HIV infection to the infinitesimal risk of oral sex – because God forbid anyone picture the former child actor taking bare dick and semen up his ass – isn’t the kind of transparency needed for a gay, HIV positive spokesperson.

And then, oddly, Danny added in his US Magazine interview that the “irresponsible” man he believes infected him over a decade ago — whose name escaped Danny for many years – has been on his mind and he has been trying to find him, even searching through obituaries and what-not.

Danny’s strange fixation suggests a blame game that goes beyond Danny’s assertion that he wants to be sure the guy “is okay.” Let us all hope that the man in question is living a healthy life somewhere, safe from Danny’s well-intentioned but pointless quest to contact him.

That man deserves his privacy at least as much as Danny Pintauro deserves his rocky, vexing media tour.

Mark

 

 

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Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 16 Comments »

Recovering from Meth, Rebuilding a Sex Life

Wednesday, September 30th, 2015

For more than a decade I was an active crystal meth addict. They were the darkest years of my life.

Lust coverI suffered numerous relapses as I struggled to get clean, and my woeful journey back to crystal meth was always the same. First, small changes crept into my behavior; not about crystal meth precisely, but vaguely related habits that had once accompanied my active drug use would begin entering my routine again.

A return to the gym and a shallow fixation on my body. An abandoned cigarette habit that returned in secretive fits and starts. A feeling of entitlement—to do as I pleased, to eat junk or rejoin the lurid party scene—swept over me like a declaration of freedom that hid its true intentions in the fine print.

And then the clarion call became more explicit as involuntary images of using drugs bombarded me, plaguing my sleep and my daydreams. The images became ever more seductive, promising euphoria and an escape from my own feelings.

But the most formidable thoughts that drew me back to active addiction were always about sex.

02262008 mugshotIt feels ludicrous to me now. The sex life of a meth addict is as compulsive as it is pathetic. The drug ignited an obsession I had never known, taking my authentic sexuality and twisting it into something unrecognizable to me today. It was a constant pursuit of sex partners, naked video chats, pornography, and increasingly extreme and dangerous behaviors that lasted days and weeks at a time. It was an endless loop of desire and disappointment, played out over many years.

Incredibly, I believed the allure of hot sex was worth the consequences that piled up. Visits to the emergency room. An arrest. The company of psychotic and paranoid addicts. Weapons pointed in my direction. I simply wasn’t capable of seeing the wreckage for what it was.

Throughout my years of addiction, and even during my recovery process, I couldn’t help but wonder why. How could an intelligent and otherwise healthy man turn his life over to such a pitiful existence? What was going on in my mind?

DavidF cropTherapist and addiction specialist David Fawcett (right), in his remarkable new book, Lust, Men and Meth: A Gay Man’s Guide to Sex and Recovery, answers these questions and many more about the nature of addiction and the stubborn link between crystal meth and sexual compulsion. I cannot tell you how reassuring it was for me to read that there are physiological reasons for my addictive behaviors. There is comfort in knowing I am not alone in the mental changes that happen to crystal meth addicts, and that these changes are reversible.

I recognized myself on page after page of this book, including the fusing of sexuality and meth addiction, the stumbling blocks of recovery, and the deep and sometimes crippling shame that haunts active addiction and the recovery process.

Most importantly, this book maps a way back to normalcy. I am grateful to say that I recognized myself in these chapters as well, as the slow but steady process of rebuilding my brain took hold during my first years of solid recovery.

Whether you are a health care provider, the loved one of an addict, or are questioning your own addictive behaviors, this book reveals the most personal—and therefore, the most shame-filled—aspect of crystal meth addiction, and it provides guidance for a way out. Make no mistake, there is joy, engagement, and a worthwhile sex life on the other side of crystal meth addiction.

I am happy today. I am in a committed relationship that is rooted in honesty and has none of the selfishness and deceit with which I conducted myself during my dark and treacherous decade. Despite fears that my sexuality had been irreparably harmed, my sex life today is healthy and rooted in affection, love, and mutual care.

There are many avenues of recovery, but the science of addiction is always the same. This book outlines that science, while revealing the stories of addicts who, like me, have questioned if their sex lives might ever be the same again.

Thankfully, the answer is yes.

Mark

(This is an edited version of the book’s Foreward, which I was honored to write. I not only recommend this book, I urge you to share it with someone you know who may be struggling. You can purchase it here.)

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Posted in Book Review, Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease, News, Prevention and Policy | 5 Comments »

Catching Up with the First Miss America to Champion AIDS Awareness

Wednesday, September 23rd, 2015

When Miss Florida 1992, Leanza Cornett, competed for the crown of Miss America 1993, she didn’t just have gay hearts aflutter over our love for pageant competitions. We adored her because she proudly chose an AIDS awareness platform — and she meant it down to her lovely bones.

98571ea32fe00beb7325a5c8f856798aWhen she won, she made good on her promise to bring HIV issues to an audience that wasn’t used to Miss America hanging out with dying gay men or performing condom demonstrations.

My interview with the groundbreaking title-holder is proof that, more than twenty years later, she is as feisty as ever.  Our chat includes her HIV advocacy memories, some backstage dish from the pageant, recovery, sex, her love for the gays, and whatever happened to that jeweled, delicate crown.

Tell me about your exposure, as it were, to the AIDS crisis prior to becoming Miss Florida in 1992. Was it already on your mind?

The first time I heard the word “AIDS” I was 11 years old. It was 1982 and I heard a newscaster say the word and what I remember most was that it was a disease that was killing people. I was in my very small Appalachian hometown of Big Stone Gap, Virginia, and I went into full panic mode because I had eaten almost an entire box of what I thought was candy, called “AYDS” at my grandmother’s house. (AYDS was a chocolate diet suppressant, I found out later). So, as an 11 year old, I thought I was surely doomed. Fast forward, as years progressed so did the disease and thankfully so did our knowledge. When I was 16, I began working professionally in theater and met someone living with AIDS, an actor and a friend. Suddenly, the news story had a face, a name and a relationship with me.

During 1991, the year you were crowned Miss Florida, nearly 30,000 people in the US died of AIDS, and it was the leading cause of death among those age 24-44. It’s sometimes easy to forget the nightmare of those statistics.

By 1991, I was volunteering at two different places in Florida. Hope and Help, was an HIV service organization in Orlando. I did everything from answering phones to taking clients to doctor appointments. That’s where I met Guy Carswell, who became my best friend. I took him to appointments where he would have his Karposi Sarcoma (KS) lesions frozen off. I left every appointment with him in tears but also feeling incredibly empowered that the doctors were making strides toward a cure.

I saw an article in the Orlando Sentinel about a couple who had decided to take in foster children that were born with HIV. Jim and Charlene White turned their home into a non-profit organization called Serenity House and I began volunteering twice a week, taking care of those sweet children. Some were newborn infants and a few were toddlers. It was that year that I competed in Miss Florida and won. So yes, it was very much already on my mind and a huge part of my life.

Was AIDS your platform for the Miss Florida pageant?

No, and I regret that. I listened to people who said I’d never win, it was too controversial. I always felt like that was a compromise I should never have made. But, in the long run, if it had been something standing in the way, I may never have had the national platform I ended up with. Funny how things work out.

e015d0d5faca72e0062fc24ddfb43a3cTell me about how you decided to use AIDS as your Miss America platform, then. I have to assume it wasn’t a popular choice.  Did you get pushback from your sponsors or pageant officials?

I had decided to champion AIDS as my cause going to Miss America no matter what. I met with the Executive Director of Miss Florida and told her and the rest of the Board that it wasn’t an option for me to do or speak out for anything else. The Florida board and everyone I worked with supported me wholeheartedly. I was surprised, simply because in 1992 the only people you heard about as activists were groups like ACT UP.

I absolutely must know about the final moments, among the finalists, before you were crowned and when you name was called as Miss America 1992.  Please, spare no emotional detail! I live vicariously for this sort of thing.

I knew I was going to make Top Ten at Miss America, not because I was super egotistical or clairvoyant, but because a hairdresser had seen the list and I was on it and she told me. I even knew where I was in the placement — number six. So I was pretty thrilled with just that alone. Once I made it to the Top Five and I got to speak and answer questions about my platform on stage, that was the cherry on top. For me, personally, that would’ve been enough.

Thank God for video because I honestly don’t remember those final moments except for what I witness in watching it back now. I remember saying to Miss Iowa (Cathy Herd) that she would make a great Miss America. Everyone thought she would win — she was a double preliminary winner. I remember when Regis Philbin announced me as the new Miss America that it must be a mistake. I was wearing white gloves and I remember thinking that they were borrowed and I didn’t want to get makeup on them when I wiped my tears. I thought about the boyfriend who’d broken up with me and hoped he and his whole family were watching. I was just stunned. Completely stunned. Have never been so shocked in my whole life.

Hold on one minute. Your boyfriend broke up with you before the pageant? Is the best revenge winning Miss America?

No, he broke up with me my first year of college, and funny enough, we’re still friends today. But he broke my heart and I wanted to see him squirm, that’s for sure.

I happen to have a sash and crown in the back of my closet, for the 2015 Miss Summer Serenity Pageant, a camp drag thing they do in Washington to benefit people in recovery like me. So, take that.  I didn’t cry when I won, I was very regal. Although those sharp stays in the crown were killing me.

I love it that you have a crown and sash…everyone in recovery deserves that but I’m especially glad you won!

Are contestants by and large sincere and gracious behind the scenes, worse, or somewhere in between, like all of us?

I think by the time most contestants get to Miss America, the catty ones have been weeded out. Girls are girls just like gays are gays (laughs) but it’s kept in check during pageant week. It felt less like a competition and more like putting on a great show. I’m still friends and communicate often with several of the girls from my year.

I know gay men who can rattle off former title-holders, their states, and what color they wore for swimsuit.  I remember actual squeals coming from my gay friends when we saw you backstage at the Shanti Tribute to Peter Allen in 1993. We’re talking high-pitched sirens of delight.

I’m very, very proud to have been able to speak out on behalf of People Living with AIDS and gay men who probably suffered the most, especially during those early years. I think I confused the lesbians, because they typically hated Miss America, but loved anyone who stood up for AIDS. I was a conundrum!

Daniel Warner Leanza Cornett 93 Karen OcambOf course, your appearance at that event for Shanti was a bittersweet moment for me, as you know I have written about. You accompanied our founding director, Daniel P. Warner, to the event, and he was covered in KS lesions. You handled yourself with such graciousness toward him, holding tight to his arm.

Because I was so closely involved as a volunteer prior to ever winning, I felt really comfortable with a hands on, no-holds barred approach. I was criticized and questioned many times along the way. I remember I was photographed at a hospital kissing a child who was HIV positive and it made the front page of the paper. I got so much mail over that!

Thanks for referring to us as “people living with AIDS” during that time. You know your language.

I was reading an article published in People Magazine about the AIDS epidemic and the journalist kept referring to the people she was profiling as “victims.” I wrote a letter to People, correcting the journalist and explaining how important it was to write about “people living with AIDS” as opposed to victims. They published the letter, and a few months later I was in attendance at a Ryan White Awards banquet and Greg Louganis was a speaker. He cited my letter to People and thanked me for standing up for PLWAs. It was a God-shot for me, proof that standing up and speaking out reaches to so many places.

Speaking of God, you’re a woman of faith, and so many people with AIDS were traumatized by some of the rhetoric by religious fundamentalists during the early years. I’m thinking Jerry Falwell, for instance. How did you reconcile that, or explain to conservatives the importance of ministering, in the truest sense, to those living with the disease?

Great question. Well, I don’t know anyone who hasn’t been traumatized by religious fundamentalists at some point, no matter if it had to do with AIDS or anything else. I definitely felt the sting of that while I was in the thick of advocacy. Thankfully, I have a lot of Biblical training and knowledge, and anytime I felt I had to reconcile anything, I could always refer to the love, the merciful love that Christ shows to all of us. I understand that even more, in recovery, because that gift of powerlessness — knowing that we can’t control what people think or say or believe — it’s very freeing. The most important thing is to love, to show tolerance. I recall telling a minister once, when he criticized me about how vocal I was, that perhaps he should just pray for me and leave the rest to God.

It feels like we still get hung up talking about sex even today, which only benefits the spread of HIV, yet you were teaching people how to use a condom 25 years ago. Is our reticence about sex still the biggest obstacle?

I think we’ve certainly come a long way when it comes to talking about sex, and sexuality. As a parent now, I think the biggest obstacle is knowing when to have an open discussion with kids, because they are much more open minded about almost everything — race, gender issues, sexuality, differences. I think it’s incredibly important to have age appropriate, honest conversations with children as early as possible. This helps them grow into tolerant, open minded adults, which is what the generation before ours, and our own as well, missed out on. I also think that adults need to be exposed to that same honest talk, through schools, clubs, churches… Talking about sex has never scared me, but the results of NOT talking about it absolutely scare the hell out of me.

You were part of the ceremonies when the entire AIDS Quilt appeared on the Ellipse in Washington, DC, in 1992. I still can’t walk through a display of the quilt without losing it. What kind of impact did it have on you then?

Oh my goodness. That was one of the most powerful moments I’ve ever experienced. I traveled quite a bit with the Quilt and worked so closely with NAMES Project. Yes, the impact stays with me.

Did you make a panel?

I did make a panel for Guy when he passed. It still remains one of the most emotionally charged and difficult thing I’ve ever done. Labor of love doesn’t even begin to describe it.

How do you feel about the arrival of pre-exposure prophylaxis (PrEP), the pill that prevents HIV infection? For me, it’s the kind of thing we prayed for back in the day, but the uptake among those at risk of infection has been slow.

Wouldn’t the landscape of the disease be so very different if that had been available “back in the day?” I know I would take it, and I would encourage anyone who’s sexually active to do the same. I think any kind of shame in taking a preventative pill would pale in comparison to the possible ramifications for not taking it. That’s not to say that there should be ANY shame in contracting and living with HIV/AIDS. Men and women who I respect, admire and love with all my heart are living with the disease, but would, I’m pretty certain choose not to if they could.

Renee Parenteau Photography)You’re in Florida now, hosting a morning show called The Chat. How’s life today, and does HIV advocacy still have a presence in it?

Life is so good. I’m on a leave from the show for now, so I can spend some time with my two boys and family in California, but I’ll be back! The show is formatted like The View, with very opinionated, funny, smart women and it’s really fun and informative, too. I stay involved with HIV/AIDS organizations. I don’t have the national platform like I did in 1992-93 but whenever I’m asked to do anything, I say yes. I advocate as much as I can and will for as long as people remain uneducated and people living with HIV/AIDS are ignored or mistreated.

Many gay men like myself can take a kind of bittersweet pride in having stepped up at a time when it felt like the world had turned against us. And you were our ally when you didn’t have to be. I hope you still take a lot of pride in that.

I really do. And thank you. It’s one of the best decisions I ever made to step into the ring and fight with all of you, gay and straight alike. I’m so proud of what we have accomplished and continue to accomplish. It isn’t lost on me that I was, as Miss America, invited into places that other activists weren’t. Churches, schools, Rotary Clubs, private organizations, the White House. I am so very proud to have been able to use my title to make a difference and have the absolute time of my life doing it. The friendships that were born through advocacy are some of the most important and meaningful relationships I have. I worked with some real rock stars. I’m very grateful.

When was the last time you put your Miss America crown on? If you haven’t done it in many years I am going to be really disappointed.

Honey, every time I vacuum that crown is on. Haha! No, actually I put it on while doing The Chat last year. It’s here in California with me now, and since you mentioned it I may just have to put it on today just for fun.

Oh yes, please.  You know I love you for that.

Ironically, my producer on the show put it on and broke it! It was so funny. She was mortified. So, a little super glue and it’s all good.

Lucky for us, your spirit is unbreakable. Thank you Leanza, for so many things.

And thank you. Your spirit and passion is contagious and inspiring. I mean that.

I inspire Miss America! I’m telling everyone. Take care, and think of me when you vacuum.

You take care as well, and thank you!

(Crowning photo from Miss America 1993 DVD; Portrait photo courtesy Miss America pageant; Photo of Daniel P. Warner and Leanza Cornett by Karen Ocamb; present-day photo by Renee Parenteau Photography)

 

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Posted in Gay Life, Living with HIV/AIDS, Meth and Recovery, My Fabulous Disease | 5 Comments »